Chrissie
I did not eat for three weeks and sleeping was not on the menu for me either.
But now I am back to normal eating habits and putting back the weight I lost. Sleep is hit and miss but I normally take my tablet to bed ( computer tablet that is not a sleeping tablet) and lie there till I drop off fortunately it turns itself off when not in use!
What is normal is whatever feels right and no two people are alike. Just rest as often as you can and cope when your in the mood. There are no rules. There is nothing that is right or wrong.
I had a pile of paperwork that I looked at for months. Put it all in a file and deal with the easiest when you are in the right frame of mind. Dont worry if you get upset while you do it. Just put it off till you feel stronger.
I found on days I was angry it was the best time to deal with things I kept putting off. On those days I felt stronger emotionally and able to deal. But I would recommend writing things down.
I write how angry I am and how miserable I am. and have done for months its a notebook to Peter and one day when I join him I will tell him all bout it. lol
Take care
MIn
Hi Eve
When Peter was on velcade, his first few infusions were long days waiting mostly for the pharmacy to produce the product.
But as time wore on it got quicker and quicker, we found making an afternoon appointment meant that he did not have to spend a whole day there.
As time wore he he changed the times of his appointment to later in the after noons because he was working mornings only meaning less time sitting aound as the day unit closed at 5pm and you could be sure of a quick turn around knowing that they wanted to go home.
His treatment was at The Freeman Hospital Newcastle.
Bloods were taken as soon as you got a ?seat? and they had a machine in the unit to do it onsite so it was 10 minutes max wait for results…
Any delays were always to do with the pharmacy who were IMHO flippin useless. taking a prescription for any other meds was always a 30 minute wait?. Why when everything is prewrapped and prepackaged in boxes eludes me. Especialy as I used to work in Boots the Chemist when I left school and nothing came prepackaged in the pharmacy but it never took more than 10 minutes to dispense a script in a buy city centre where we were open until midnight just for prescriptions.
I do think that when you complain they soon sit up and take notice whereas when you just accept the situation you become immune to the long waits.
Min
Dear Chrissie
I understand entirely how you feel. 53years is a lifetime, and cannot be forgotten, or pushed to the back of your mind. Peter and i were married for 40years and its the strangest thing not having him here or knowing he is never coming home.
Some days I am fine and others without rhyme or reason I am down. Almost every day I am very very tired
Nothing in particular triggers it but on those days I just give into it and blub for as long as it takes. Often staying in the duvet. Occasionally coming up for air or coffee.
On other days I throw myself into tasks that in other times would have taken hours to do but now take days to get up the enthusiasm to start. I think I wear myself out just thinking about what I want to do, I dont get round to doing it for weeks but thats how I cope. Somedays the hours fly by others the day drags. The night times are the worst.
Each day is a challenge. I talk to Peter write him letters. Shout at him or just chat when I get excited about something. Some would think I am going mad ( I do too ) but we just have to do whatever we can when the mood takes us.
The hurt does not get any easier you just get used to it, like a muscle ache you know its there and you know it will get better you just dont know how long it will be before it gets better if at all.
Suround yourself with the smiling photographs they are a comfort and an opportunity to look back and smile.
love MIn
Its very cold Bridget, and the chill in the air is cutting. The frozen north is still that,but no snow yet.we had a few mornings with frost and I dug my ski suit out to keep me warm while walking the dogs but not needed to use it yet.
I'm off to visit the grandchildren at weekend. Taking all the dogs for a change. Perhaps it will be warmer near to brum. Will let you know. They love snow!
Love min
Peter would be proud of me, I have been going mad with the cordless drill.
Fixed a curtain pole that kept falling down. ( Never had curtains when I had my man!) Next put up some metal tie backs to hold said curtains back when open.
Followed by a make up mirror really its a shaving mirror but as I am blind as a bat without my spectacles needed a magnifying one. Once I had mastered that got carried away and put up a hook for the hairdrier and tongs.
Decided to quit whilst ahead with the drill and started rubbing down the paintwork in the hall.
Got sick of it and decided to get some quotes ???whereupon I found out I could have a Caribbean cruise for what they wanted to decorate the hallway. So I think I will have the cruise instead of the painter and decorator.
I will plod away at it and have the cruise when I am finished if I am up to it. Its not like I have anything else to do. !
Now as for the sims on laptop well I played it on my nintendo ds so I know exactly how addictive it is but cant get into much now without losing interest quickly.
Today I cleaned the garage out and finaly tidied it up so I can fill it up again with painting stuff when I get started on the hall. But before I can get started I have to lift the ceramic tiles on the floor so big dirty job which may have to wait till I am in the mood.
I hope you get your birthday pressy, and the sims does not need a massive processor as its not shoot em up. I liked challenges of the sims and if big iff I get the cruise I will take my nintendo and keep myself occupied with it LOL
love Min
Cant comment on that but I I bought a 'tablet' recently if all you do is surf the net they are brilliant. But if you plan to do work on it then not much use with word etc.
Look at http://www.ebuyer.co.uk I have bought loads of stuff of them and they are really really well priced with good customer service.
Alternativly suggest you look up FACEBOOK CHEAPSHOP. Usualy local people who want to raise money to buy something better.
Next ask the family to make it a birthday, mothers day, and next christmas pressy:-) In advance
PS are you sure your laptop has given up the ghost and its not just the charger?
love MInx
Bludy Brilliant,
Worth all the agrivation to hear those words, and in view of the fact the dex is doing the 'trick' best stick with what you know:-D .
Just put a gag on Steven so he cant be Monster Man:-S
Seriously though, I am really pleased for you both you deserve a lucky break and its your turn.
Love Minx
PS I recall Peter trying to reduce the morphine and becoming a monster, the Macmillan nurse said morphine and pain killers have to be reduced under supervision as there is a dependency on them, so the reduction has to be a controlled one. Getting the pills in smaller grms allows ie 5mg makes the reduction easier. so if he is on 30 mg per dose taking 25mg is a better option and gradualy coming of them in this way, as your body gets used to them and craves them to a degree even though they are absolutly needed for the pain. Bit like a smoker trying to go cold turkey… I know that one well!
Ah Ray welcome
I think you mean autalgouse cant spell it but it means a transplant of your own harvested stem cells.
Dont worry there are lots of people on here who have been down the route your about to commence and hopefully they will offer you lots of advise should you need it, or just an ear when you feel you have had it all
Up to here holds hand up to forehead…. Hopefully you will walk it and it will be a breaze but we are always here for you.
Regards
Min
Good Luck with the new puppy Sarah, I dont envy you the running to the door every now and then but as its so much colder here in the frozen north I would want to wait till summer time when the door is permanently open !
The smell of new puppies is oohh so nice but the cleaning is ugh. My last one we had a cat flap on the back door and she used the cat flap and when she could no longer get thru it we had to replace it with a big dog flap but she housetrained herself which was pretty darned good. Now out of all three of them she has the best bladder in the world…. Just as well as the three of them now live in the house with me and dont have access to the flap.
As for the tears I had a better day today, but dont expect it to last….. I am planning on going to one of those 'meets' on Sunday dont know if I can do it but need to get out and widen my horizons
Love MIn
Hi Helen
Our last holiday we used a company called insurancewith http://www.insurancewith.com/ they specialise with people with existing conditions and cover all cancers. Katherine refered to Revlamid as maintenanace therapy as oposed to chemotherapy and bearing in mind Peter had kidney damage and bone damage not to mention a double heart bypass. I amanaged to get it down to under £100 with full disclosure. Found them on the sky news website as the founder of the company had fought cancer needed a holiday and could not affort the insurance so developed the company specificaly for cancer sufferers.
Have a nice one
Love MIn
Hi sarah,
I have had a whole day of weeping today and I blame the news. Yesterday evening they said it was Blue Monday
I thought what a load of tosh.
Today slept well woke up had breakfast went back to bed, slept for 2 hours and woke up disconsolate Havent stopped since and my nose wont stop running to accompany the tears. So thats another cold to deal with.
Life is a bitch particularly today.
Roll on Friday. Not that the weekend is any better its just anther week over and done with. Moving on?
Min
Hi Val
My husband was taking quinine too but if he did not drink sufficient liquids the cramps in his legs won.
I found myself with cramps recently and once I drank more liquid it helped. Also I am told that leg warmers help. Weight lifters suffer cramps apparently and leg warmers increase the blood flow; or something like that!
Hope it helps
Min
Dear Dear Gill,
Its so hard being a carer and knowing that the time you have with you loved one is under the clock so to speak. I know exactly where you are coming from.
Peter was on prednisalone steroids for quite a long time before Dreaded Dex. the problems he had with prednisalone were more bone damage due to taking oral bone strength tablets.
But its a gentler drug taken more frequently rather than the heavy pulse doses of dex.
My regret is not discussing the dex problems with Peter, I used to say to him this is the dex talking and my gentle man who never aswered me back in 40 yrs would scream ? dont tell me its dex?
I think it was a mix of dex and shear frustration at knowing his time was ebbing away.
Dont let that happen and find things to do and talk about, If necessary ????.write it all down. I know how difficult it is to have an argument at times like this but the written word is less abrasive as you take time to think each sentence rather than spitting out bile.
The treatment is worse than the disease when it takes away the man you love and replaces him with his dex alter ego..
Try to remember those days of PMT and how awful it made you and how uncontolled your emotions were That is a small amount of the condition dex imposes on them.
Its easy for me to tell you from a sitting on the fence point of view.
But believe me I recognise how you feel and did the same to some extent as you did but not dealing with it is eating you up and not wanting to upset him or you at this difficult time is making it worse.
Write it down and you will feel better and so will he.. He didnt want to tell me how he was feeling, because he knew he would get upset in dealing with it so we wrote the annoying things and it enabled us to discuss it properly? Pathetic really after 40yrs we could not talk about it but this was because we only ever skirted around the issue and made each other unhappy.
These are exceptional circumstances, and few people have to deal with the problems MM throws at you never mind the bludy treatments.
I hope you can overcome the problems and have some pleasant memories of writing love letters ?
Love MIn x
Dear Chrissie
My deepest condolences to you and your family.
I can only imagine what you are feeling but it may help to know that, when Peter died I was so relieved he was no longer in pain, no longer worrying what was going to work and wasnt. I no longer had to watch the handsome well built man I loved wallowing in what the damn disease and the treatments had done to him.
I felt sorry for myself and my own future, I cried buckets. I still do.
But I console myself with the thought that he is always near me, that I will learn to live on my own, and survive in the knowledge that we loved one another. Many people don?t get to experience that.
I know you will be bitter that he suffered so much to try to overcome mm but know that if he had not tried you would always have wondered what if.
Your feeling numb and as if this can not have really happened. Take time to rest if you can, see your GP to get something to help you over the coming weeks and try to look after yourself as best your able.
David is in a better place and would want you to carry on, take your time and if you need to private message me I have finaly learnt how to sleep most nights but I never go to bed early if you need me I am here.
Warmest Regards
Min
Hi Mandy
Tell your friend to put them in a carton of yogurt or similar desert. she wont feel them going down.
